Pain Fog: Living in spite of Chronic Pain
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Day 299. Goodbye to the most Challenging Year of My Life.

12/30/2015

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We live in a work obsessed society where one's value,certainly in themselves, is measured by what kind of value they bring through work. It is a common mantra among most to say how completely busy you are and how you don't have a minute to yourself. Those same people often schedule gym time, manicures, massages etc. Life seems to take on some kind of heightened value with the number of projects everyone has and the lack of time to complete them. This phenomenon has been ramping up my whole adult life.
I have had a unique outside view on this, I left full time work when I had my first child and have never gone back to full time again. The choice wasn't entirely my own. I had just started on the path of returning to work when my doctor suggested long term disability. It was an unexpected and abrupt end to a career of any sort for me. I've worked various casual and part time positions as my health would allow, but never had to balance a work home life they way most of my friends did. While there were many things I missed, I did not miss the pull in each direction for more attention.
I could choose freely where and when I worked and I was able to keep our children happy while doing so. That, however came at a great cost to me. Granted our children benefitted greatly from the care they received with the consistency of having parent being at home, but at times it was a lonely existence for me. When both girls had a full day at school, I had a full day at home and although I had been with the children full time for seven years at that point, I missed our daily outings and learning experiences. Volunteer work became very satisfying for me. We could have used my income but we learned to live without it. Being a volunteer gave me a sense of contribution and I was always honest about my health and what I was able to contribute.
I did find some part time positions but with a spinal cord injury causing chronic pain, I didn't have a lot of choices. It was about this time that I was being investigated for serious medical conditions and finally a very major surgery with months of rehab to learn to walk again. So as you can see I had a purpose, in fact I had two. One was to hold our family near and try to be the best parent I could be in this very challenging position. Secondly, I was very consumed with learning to use my body to the best of it's ability. I have approximately fifty percent of the feeling gone in my left side and severe weakness on the right side. I had my work cut out for me.
It seems foolish now as I write this, but I know even during this time I had a sense of guilt for not having a career, or meaningful work.
In retrospect my meaningful work has been to: heal this body, preserve my mind, foster good mental health not only in myself but my family, and keep us all well fed in an inviting home. We have raised two beautiful, well adjusted daughters. At the age I am now, I can clearly see, that is all that matters at any given time.
Life comes with its challenges therefore I would have had different ones had I been healthy. Our work here on earth is not meant to be a paid one, it is to accept our challenges with grace and dignity and offer what you can to others. I'd like to think I have done that. Those of you with health challenges who feel a little lost, I would ask you to look for meaning and a sense of satisfaction in what you do and don't ever feel you have nothing to give.
For those who read this without health challenges I ask that you be grateful for the health you have and in the year ahead you slow down just a little. My friend has told me she has a goal of one day of the week without work of any kind, no to do list and no "shoulds." That's a great idea and for a woman who is driven by work a very excellent start.
As 2015 comes to a close I have to say I have had my challenges this year but I have had tremendous support and love too. As my Mother always says it's a ill wind that blows no good. My winds came with lots of good, and so will yours, dig deep to find it and slow down long enough to enjoy it. Happy New Year readers and friends, you are among the blessings I count in 2015.
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Day 297. Family and Friends. 

12/28/2015

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It's been about a week since Meg first arrived home and Christmas started for us. Tomorrow morning Jerri leaves to head back to Toronto and the family is separate again. All in all its been a great visit but none of us would say it was a typical Christmas. My fatigue and pain has hampered participation with most things.
I love the hustle and bustle usually, but this year any activity, no matter how modified wore me out. I loved it while doing it but had to rest afterward. I can't say I wasn't forewarned; my doctor was fantastic, in that he was able to lay it out for me and told me to expect this. Three major surgeries involving the spine, in one year, takes major recovery. I'm impatient and I want it now, and with every milestone there can easily be a set back. I'm not complaining, but being realistic. When you look put together and are back to regular activities many people can't see how much help you actually need.
I write about my experience to educate others about the silent struggles many of us have. Usually it it short term and we are back to ourselves before it becomes a lifestyle choice. For those of us who have chronic pain or conditions, we have to think differently about just about everything.
It has made me appreciate the differences in people. When you are having an interaction with a stranger we have no idea what their lives are like, what struggles they have or what their home situation entails. We often come to a place of judgement by comparing the actions of others to what we would do in the same situation. The problem with that is no two people experience the same situation the same way. I'm careful now to think before I say "if that was me I would....."
Another way to reframe that is to ask the person, could you do it .....this way? Because it is possible they haven't thought of your idea but it is just as likely that your idea will not work for them based on their life experiences.
I'm resting now after a family clean up session before our guests arrive. I have learned to conserve energy so that there is energy for fun. The fun time with family and friends have carried me through this process of recovery and I know I can put my head down and work on the Physio because you have to work hard, to play hard.
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Day 295. Christmas Traditions. 

12/26/2015

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I really want my energy back. I woke up this morning worrying, and you know just where that leads, nowhere!
We have not seen any extended family for the Christmas season because it would mean travel. With a caution from my medical team I have not done our usual running around before and after Christmas. It's time to allow some normalcy to my routine in hope that the bones are fusing and muscles and tendons are reattaching and there's no further stress on the body.
It is "doctor's orders" but still hard to follow. We don't have any family in town any longer and we have our Christmas traditions of seeing them before and after. This year is an exception, we won't be travelling. I know it is sensible but it doesn't make it any easier.
My 88 year old Mother is among the family I wanted to see. I was going to go in November, than December and now I believe it may actually happen in January. It's been hard to wait. She and I talk daily and she has been sick several times, my sense of urgency heightens each time. I still need a companion to fly and Jerri is able to do that, we hope to go together later in January.
In the mean time is hasn't really felt like Christmas without our usual traditions of family, but having Meghan at home has been wonderful and Jerri is arriving today.
I'm remembering the many years, fifteen or more we hosted Christmas dinner for Barry's entire family. We had two small children at the time and it was a busy, busy time. There were no less than eleven of us, sometimes there was a few more.
Barry's parents and his stepmother arrived for breakfast and to watch the girls open their gifts bright and early. Once that was done they went home for a few hours to rest, we put the house back together and started the dinner preparations. It was a very full day, considering it was Jerri's birthday as well. After dinner the birthday cake and candles arrived and it was a birthday party. We usually fell into bed exhausted on those nights. The next day was saved for rest and playing with the girls and their new games and toys. Barry's Mom always came over for hot turkey sandwiches that evening.
Since his parent's are no longer with us, Christmas has become a lot quieter. We now get up when we wake, and take it really slow. With just the four of us to cook for it changes the flow of the day. We eat when we decide. A new tradition has emerged, Christmas dinner in our P.J's.
Things changed so quickly and so radically that I decided it was time for new traditions. Barry and I purposed a fondue on Christmas Eve. It started as a simple after church tradition and has turned into the event of the year.
Let me explain. Across town another family had lost their loved ones as well who were deeply entrenched in their Christmas. They also have two girls the same ages as ours who have known each other since they were babies. We asked them to join us. This is our third or fourth year and it is such fun. We eat like royalty and act like fools. It is such a wonderful time for both families who look forward to the whole new tradition we have created.
Many times we read quotes such as "friends are the family we have chosen for ourselves" and in this case that is entirely true. Each family with nowhere to go and nobody to see on Christmas Eve have created a tradition, that each of them wouldn't miss for the world.
Many people are lonely at Christmas, it is not just those who are alone. When you are a part of a great big family full of tradition is is easy to miss, but look for it and include others when you can.
The one ornament on my tree that resonates with me the most is "Christmas is love" because I believe it is. When you are surrounded with that love don't forget to open your circle a little and let others in.
Merry Christmas dear readers, you all have let me in; into you minds and in some cases your hearts and prayers. I have appreciated your comments and the love and concern I have felt throughout this healing time.
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Day 289. Scaling Down But Feeling the Love!

12/20/2015

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A week before Christmas and all through the house not creature was cranky or even stressed out. I have followed a scaled down plan this year and it seems to have made a big difference to the peacefulness of Christmas.
We don't ever go to a lot of preChristmas parties anyway and there were fewer this year. We didn't travel, spent less time at the malls chasing the perfect gift and have put the focus on being together. This is out of necessity but it feels much better overall. I do miss the build up a little but the focus really does become about spending time not money and energy. Today that begins. Meghan arrives mid afternoon and we are all so looking forward to it.
We have ten days of family only and then our very good friends join us for two nights. With our Christmas tradition of a Christmas Eve after church fondue, Jerri's birthday on Christmas Day and family on Boxing Day we are all feeling very satisfied with our choices.
This year more than most, I am truly grateful to everyone who has been in my life and encouraged me with your love and support. The peace I am feeling is not taken for granted. I know there are many hours of Physio and pain ahead of me, but I look at from where I came and smile. I'm on the right track.
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Day 278. One tough lady!

12/9/2015

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I'm feeling better, enough to want to eat again. I look as though I've been run over by a truck but make-up can change that....somewhat. I'll see my doctor today.
One of the most common things I hear from people is that I have grit, I'm tough and my resiliency is impressive (that one from a doctor).
When I hear that I feel one of two things, a sense of pride in myself or a feeling of not being able to do this any other way.
I have obstacles every step of the way. As an example and there are many, every time I go to Physio for my back, my knee becomes very painful and swollen. Just when I was gaining strength, I came in contact with food poisoning. I won't bore you with the many other examples but there are many.
I've developed a way of dealing with the sidetracking obstacles. I acknowledge them for what they are and move on. I see too many people give up; which I feel like doing, but I know it's a dark place to be.
The art of grieving is an important one, I'm not dismissing it. We all must take the time to grieve a little of the loss of former self, but don't stay stuck in it. The opportunities for happiness will pass you by while your head is down crying.
I've lived by that most of my adult life. I experienced a tragedy at aged eighteen when my boyfriend ended his life. I was, of course, devastated. At that time nobody thought much about counselling and care for those left behind. I had to deal with it myself. I read everything I could and came to some understanding of not blaming myself and went on to work in the field of social work. I had developed the non-victim approach with myself and I starting talking to others about it too. I could see that those who stayed in the victim role stayed stuck in the past, and those who did not could actually move on with their lives. I'm not dismissing the hardship I felt or many others feel daily. I just know for me I couldn't let it define me or I would have fallen down and not gotten up. There are many people in this world who live with the pain of loss and they move on. When you look in the world today it is around us everywhere. Think of those millions of Syrian refugees. They have left their homes and everything they have known and loved, to WALK to a better life. That is the kind of pain most of us will never feel, thankfully. Some of them have physical pain as well as the mental anguish they are feeling. Yet the human spirit is strong and they are ready and willing to come to a country they have never even heard of to start over. We all have the resiliency within us, we just need to find it.
I have lived my life and raised a family with that approach. Be grateful for what you have and deal with adversity as it comes, but don't let it define you.
One thing I know for sure is in this life we all need a little help from time to time, and it is much easier to help someone who is helping themselves. It is also much more pleasant to be around those who understand life has it bumps and rough spots. We are never alone in that, it may look as though you're getting more than your fair share but we never know what is happening in the lives of others.
There's a good article about resiliency I was reading today I thought I would share this with you. ​

I was talking to my niece this week and I smiled at her comment, "Aunt Maureen you are one tough lady."
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Day 275. Another Bump in the Road. 

12/6/2015

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Yes, another temporary bump in the road. I had a wonderful week-end with the family, but I came away with a not so pleasant after affect. Something I ate was not the best. It seems a I came away with a food borne illness. I've not been feeling well since.
It all started on the Friday evening when Barry and I decided to stop for one of my favourites. It is a fried chicken joint, but not just any fried chicken, it is an east coast franchise and there are only two that we know of in Ontario. I was excited by the treat as I have been dieting for almost two months. We had separate meals and although mine tasted fine I couldn't finish it and there was something I couldn't quite put my finger on. It turns out that is a common feeling when there is a problem with food. Although it is tasteless and without aroma it can slightly change the texture to make it not as appealing when it is tainted. We didn't give that a second thought at the time, off we went to met the girls and get on with our weekend.
Later in the evening I had what I would call a heavy feeling stomach. Not sick, but a little uncomfortable. It wasn't until later the next day when the first sign of trouble arrived. And it was mild and didn't ruin our evening. In fact I went on to eat a lovely meal later that evening.
Over night that night I felt ill and up to the bathroom often. The next morning I was slow moving but having had promised Meghan a leisurely day downtown, I pushed ahead. I often do this at times like this because my disability often keeps me from fun events with the girls and Barry so the last thing I want to do is to cancel.
I should have cancelled. Once downtown Barry and Meghan wanted to find a cafe for brunch, I wasn't hungry. We entered the crowded cafe and found seats. As I looked at the menu I knew I was in trouble. I told them what was happening and I may have to leave at a moments notice. I made almost for them to finish and had to go outside to wait in the fresh air.
The car ride back to the hotel felt long. I crawled into bed after taking a gravol (an anti nausea medication for those not from Canada).
I felt terrible, physically and emotionally. Cancelling or cutting things short is a common thing in our family because of my health. I thought we had carefully planned this weekend not to have to deal with that. I felt ripped off. I had a whole afternoon with my baby girl and I had to spend it in bed.
She however,despite feeling sorry for me was okay because there is always a plan B. Plan B meant that she got to take her dad to a hot yoga class. Off they went and I slept the afternoon away. After a couple of hours they all arrived back including Jerri. We decided to watch the Grey Cup in our room given the circumstances.
The ride home the next day was not a pleasant one for me. It meant Imodium and lots of stops.
To make a long story short, the week consisted of me being home near a bathroom. It became more concerning as the week went by and I wasn't getting any better. By Wednesday I was feeling very confident that it wasn't a virus as too much time had passed.
I called the public health office in Guelph. I was very impressed with the thorough assessment they gave me. Afterward they had enough information to make the conclusion that it was in fact a food borne illness. They said the next steps were for me to see a doctor, and for them to go and inspect the fast food place I had eaten at.
By the end of the day, they had done their part. I got a call from them confirming they had been there and the inspector was satisfied they we handling food properly, the food was being cooked to appropriate temperature and so on. What they couldn't confirm was that the food I had eaten on that day was good or not. She still agreed I had a food borne illness and it was likely from there.
I on the other had had consulted Dr. Google. Bad, yes I know, but if you only knew how many times I see a doctor a year you may understand my reluctance.
By Friday, I had taken on a greyish colour and dark circles were the most predominant feature on my face. I felt sick. Done, worn out and just plain tired. I had eaten only toast and soup all week and little of that.
I finally called my doctor's office and explained my situation and how bad it had gotten. The receptionist who knows me well, said he's going to want to talk to you, he'll call you back. Fifteen minutes later he called. When he heard the sequence of events he agreed it was food poisoning and said those dreaded words. "I really should admit you!" There was a pregnant pause, before he said, because I know how much you would hate that, I will phone in a prescription and if things get worse in any way, I had to promise to have Barry bring me to the hospital to be admitted.
I got off the phone feeling like I had dogged a bullet, both because of the hospital thing and to be honest I almost never called. How stupid of me. I should have called earlier in the week.
I've had two days of antibiotics and I do feel somewhat better.
I have been drinking Gatorade and eating as instructed, and I hope to improve daily. I will see my doctor on Wednesday.
That's the whole crappy story, such as it is.
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Day 272. Ocean Float.

12/3/2015

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Some of you will remember my friend Sandra was a guest blogger while I was in hospital. She wrote about her experience in an ocean float tank. 
I'm happy to be able to add my own perspective to the experience. Without knowing about Sandra's experience Meghan and Jerri thought it would be a great birthday gift for me while I was in Guelph. I love when those things happen. I didn't even know it was available in Guelph so I was pleasantly surprised.
We arrived on Friday evening and spent the evening catching up with one another and then Saturday they brought me to my appointment.
It was an incredible experience. I will give it to you from my perspective. We arrived at the yoga studio and immediately were offered tea and a cozy seat. She prepared my room by lighting candles and placing towels. My experience began with an explanation for my 90 minute relaxation. The outer room was candle lit and contained a shower with had a steam feature and an aromatherapy feature. After showering I enjoyed a lemon grass and eucalyptus stream. I almost didn't want to leave it. Within the room is another room which contained the ocean tank. It contains as much as 900 pounds of Epson salt in two feet of water. I have to be honest, I was worried about being claustrophobic, I've had one too many MRI's. What was excellent for me however is that the door to the room could remain open and the ceiling within the tank was very high and star light.
I floated for a while with the door open and was able to enjoy the scents from the stream room. I finally felt comfortable enough to close the door and enjoy the experience completely.
It's amazing how floating in water can relax the body almost immediately. I floated in there without a care in the world as every muscle in my body relaxed and the Epson salt pulled toxins from my body. In my case there was very soft music for the first and last fifteen minutes. I really enjoyed the music it seemed to add to the experience.
After my time was up in the tank, the process was then reversed, I showered and streamed and prepared myself for the rest of my day. My skin was amazing and I have never felt more relaxed. I would highly recommend this treatment for anyone. There is absolutely no downside.
I would recommend that you also read Sandra's blog as she did a great job of explaining the benefits and history of its invention.
What a thoughtful and beautiful gift from my girls.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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